My Name is Eric, I turned 41 last week, I was diagnosed with PAN about 18 months ago.
For a number of years before my diagnosis I had terrible skin rashes on my lower legs and feet. Topical steroids made little difference. Ironically since I could find no cure for this skin disorder I had a skin biopsy taken some 2 years before I was diagnosed with PAN. The biopsy that indicated possible vasculitis. However my GP said this was probably an anomaly since the condition was so rare.
Fast forward a couple of years and I still had the skin disorder but I was getting increasing pain in my feet and was running a constant fever I had headaches all the time. For several weeks I had tiny sores on each foot which where incredibly painful.
My doctor didn't realize they where tiny ulcers and we went through four courses of antibiotics before the sores in the space of one week grew into full blown ulcers about 3cm in diameter on each foot (ankles and instep). These ulcers where incredibly painful and I was unable to walk, I was hospitalized for 3 weeks (under a dermatologist) while tests where ran (in the week before being hospitalized I started on 100mg of prednisolone per day) virtually nothing showed up in bloods etc. the only positive indication I had PAN was from biopsies.
At this stage it was thought that it was isolated to the skin. I left hospital still unable to walk properly and went home. To take various cocktails of auto immune suppressants and prednisolone.
About 3 months after I left the hospital I noticed my left arm getting thinner and thinner I also noticed I was shaking a lot in that arm. By this stage my GP had got me to see the top rheumatologist (Professor Cleland) in South Australia. He decided I needed to see a neurologist. The neurologist initially did a fair amount of electrocuting me and only finally came up with an idea that I had some sort of motor neuron opathy that might be related to some antibodies present in my blood after 3 visits.
Apparently IVIg infusions had been shown to help in this sort of case so I started on a course of infusions which have seen my arm grow back substantially. I still shake in the left arm and my hobby of flying radio control helicopters is history since I no longer have the coordination.
Thus my current medication is 25mg prednisolone a day plus 150mg azthioprine a day and 125mg of Ig by infusion over 2 days once every three weeks. This is the second time I have been as low as 25mg of prednisolone the first time was nearly a year ago and the symptoms just came back. (Forgot 3 weeks on pred initially cleared up the skin disorder on my legs).
I have a couple of questions, It is really hard to find out stuff like this when you have such a rare disease and live in a city that only has 4 or 5 people with the same condition as you.
1. I am currently taking a BSc in Maths I have nearly finished second year my results so far have been outstanding but more and more I have to struggle with concepts I found simple only a year or so ago. I have a feeling that the prednisolone is the cause of this but can't find any information that clearly indicates this is the case. I have no trouble with everyday living it is just complex abstract concepts, also I note my memory is really bad.
2. Within a few months of starting taking the prednisolone
my face became moon shaped and I have put on huge amounts of weight. I eat far
less now than I did before but cant seem to control this. Does the moon face
disappear once you stop taking the prednisolone?
How long would that take ?
Anyway thanks for reading my rantings
This story had originally been published on the Pan-Support-Website of Ed Becker. Thank you for letting me publish it here.